Update: Professional Cancer Patient Me

I’m stuck. I’m blaming the usual suspect: prednisone. It’s got my head all messed up and I want to round up recent professional cancer patient activities, but I’m feeling really dumb and as if it isn’t worth writing about. More of the same. I’m content, I’m depressed, and I swing unpredictably between the two. So, stuck.

Guess I’ll go straight for the clinical. Can’t get too mired in straight forward facts, right? Monday’s CBC said I have 169 platelets. That, as we all better know by now, is awesome. I am scheduled for chemo next Tuesday. Please note that this makes three scheduled chemos in a row. What, a routine falling into place? Hush yourself. I don’t need you jinxing me.

Mutual Detestation Society
Based on my platelet count, New Doctor has dropped my prednisone by 10 mg. Praise be! She also said that if my counts are still looking good on Tuesday, she’ll drop me another 10 mg. You cannot imagine the sheer relief and pleasure this possibility brings me. I’m tired of feeling like a perpetually humming tuning fork. It’s exhausting. And yet, I cannot sleep. I hate my big, fat, prednisone face and belly. Then there are the cramps in my fingers and jaw. Now, if you’re tired of my relentless jabbering and writing, these little side effects may not sound like such bad things. But, they are painful and they slow my work. You know, my real work. Typing gets challenging.

The physical fatigue is maddening, too. I climb stairs like I’m trying to summit Everest with a 175 pound pack on my back. My quads burn and I have to put two feet on each step before I take on the next. I really hate physical manifestations of what I’m dealing with. F-ing annoying. I’m strong and independent. Huffing and puffing my way around does NOT jive with that view of me.

A Rising Star in the Category of Comorbidities
The radiation damage to my shoulder, which for years existed as deeply burned, reddened and hardened tissue, has now become a gaping, oozing, wound. It requires twice daily dressing changes, antibiotic ointment and over the past two weeks has continued to widen. There are (no kidding) two holes on the top of my right shoulder. I now have a wound care specialist. An x-ray shows that the bone in the area is intact and there is no infection in my bone. That’s the good news. The bad news is that I have a lot of calcifications that are working their way to the surface and destroying any semi-viable tissue in their paths. Hence, the gaping wounds. I'm fighting a strong urge to post a photo of the wounds because it's just that freaky looking.

I saw the wound care specialist yesterday, and he debrided the wounds (again). He said the wounds will probably get bigger. Lovely. Right now, the plan is to get the area cleaned up and as healthy as possible before we consider our next step – how to close the wound up, if that is even possible. I see him again in a month.

But here is the best part: since this wound has opened up, I have developed lymphedema. My arm is swollen with lymphatic fluid that cannot drain properly because I had lymph nodes removed during my mastectomy and the oozy stuff in my wound is over-taxing my body’s sewer system. New Doctor is working on getting me a lymphedema pump and sleeve. I am going with notion that this is a transient thing that will subside once we get my shoulder under control. I need to go with this notion otherwise I’m going to get royally ticked off at the possibility of having to wear a sleeve for the rest of my life.

Scans
To be done this month. I need to schedule.

Donations for Andrea
Assertive Cancer Patient says she has received over $390 in donations for Andrea. That should ease her mind and grocery bill, if only for a little bit. I’ll bet it made her smile at the generosity of those unknown to us but whom we touch. Thank you so much if you contributed.

Cancer vs Medical Expenses: Which Will Kill You First?

Those in my direct line of fire have heard me rant with frustration about the financial burden my cancer puts on me and my family. I work full time and have good medical benefits. But, the money that flies out the door to continue my treatment has me in constant worry about having to sell our home. I pay my bills on time, but when I was on disability for three months, things got really sketchy. I have a beautiful home, put food on my table, heat my home and my child is properly attired. I am not destitute, just very, very, very overwhelmed.

BUT, I also acknowledged that I am among the lucky ones who can work, and have benefits. If it comes to it, I can sell my house and move into a condo to continue paying for co-pays, prescriptions and, oh, more co-pays and prescriptions. That's life, right? I know many others fare far worse monetarily than I because of their cancer. THIS is about one of them.

Assertive Cancer Patient posted the other day about Andrea, a woman she recently met who is facing Stage IV breast cancer as a single mother of a three-year-old. She is on disability and struggling very badly to make ends meet. She posts about it here and has set up a fundraiser to help Andrea out. She is hoping to collect enough money for Andrea to buy enough groceries for the next month. If you can, please consider making a donation.

Teri, The Cheeky Librarian, has also entered the scene to get some assistance behind Andrea. She shares her opinions on the topic the costs of cancer to the individual patient and helpfully includes links to possible sources of funds, for those of you who need financial assistance.